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Genetic testing

Huntington’s Disease and Genetic Testing 

This booklet is a good starting point for anyone who is considering genetic testing for HD.  

It provides information for people who have been diagnosed with HD or who have a history of HD in their family. It outlines the genetic process (how HD is passed on in families) and also describes the choices available for parents who are concerned about passing on the HD gene to their children. 

Genetic testing is not for everybody. Each person has the right to make their own decision and this booklet provides a list of pros and cons for you to consider. 

This booklet covers: 

– a brief description of HD and its symptoms 

– how HD is passed on in families 

– the genetics of HD 

– genetic testing (either before or after symptoms have started) 

– prenatal testing 

– health insurance disclosure 

– pros and cons of testing. 

NB
The information on insurance on page 21 of the booklet is however out of date. See here for separate information on life insurance from 2019-2024.

 

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Replay the free online webinars and self-care and wellbeing workshops for carers conducted during Carers Week 2020.

A Caregiver’s Handbook for Advanced-Stage Huntington Disease – Pollard, J. (ed.) 1999

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Isolation tips and support for young people and their families 

WORDS AMY HALE
As everything changes around us day by day, in ways most of us have never experienced before, we are feeling a lot of uncertainty – in our own lives, for our families, friends and for the world in general. In a situation like this, both the known and the unknown can cause increased levels of worry and stress, especially for those in families affected by Huntington’s disease who are already coping with a lot.
Access our Youth Connection counselling services.